Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom.
Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom.
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DOI：
10.1038/ejhg.2016.188
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发表时间：
2017-02
期刊：
影响因子：
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通讯作者：
Kelly SE
中科院分区：
文献类型：
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作者：
Carrieri D;Dheensa S;Doheny S;Clarke AJ;Turnpenny PD;Lucassen AM;Kelly SE
本文探讨了遗传学领域的医疗保健专业人员和临床科学家的观点和经验，即当与患者或家庭成员的健康相关的遗传信息以潜在的重要方式发生变化时，是否存在重新联系前患者的义务和/或责任。它基于 N=30 次半结构化访谈，以重新联系场景的小插曲为指导。样本包括英国不同医学专业（临床遗传学、其他“主流”专业现在提供基因检测）的医疗保健专业人员，以及来自地区遗传学实验室的科学家。虽然在某些情况下认为重新联系是可取的，但大多数受访者对其在国家医疗服务体系 (NHS) 当前限制下的可行性表示担忧。确定的主要障碍是资源不足（时间、人员和合适的 IT 基础设施）以及角色边界和职责不明确。由于主流专业越来越多地提供基因检测，所有这些都变得更加复杂。根据不断变化的遗传信息，就临床专业在重新联系前患者方面的作用和责任以及需要哪些资源和基础设施达成共识，通常被视为制定重新联系指南的先决条件。
This article explores the views and experiences of healthcare professionals and clinical scientists in genetics about the existence of a duty and/or responsibility to recontact former patients when the genetic information relevant to their health, or that of family members, changes in a potentially important manner. It is based on N=30 semi-structured interviews guided by vignettes of recontacting scenarios. The sample included healthcare professionals in the United Kingdom from different medical specialties (clinical genetics, other ‘mainstream' specialties now offering genetic testing), and scientists from regional genetics laboratories. While viewing recontacting as desirable under certain circumstances, most respondents expressed concerns about its feasibility within the current constraints of the National Health Service (NHS). The main barriers identified were insufficient resources (time, staff, and suitable IT infrastructures) and lack of clarity about role boundaries and responsibilities. All of these are further complicated by genetic testing being increasingly offered by mainstream specialties. Reaching a consensus about roles and responsibilities of clinical specialties with regard to recontacting former patients in the light of evolving genetic information, and about what resources and infrastructures would be needed, was generally seen as a pre-requisite to developing guidelines about recontact.